My son Will had a Chiari Decompression in December 05. His curves have progressed 10 degrees since the surgery and his doctor is now recommending expandable rod surgery with expansion surgeries every six months followed by a spinal fusion at 12 y.o. or so. He has other health issues ... Coates Disease (blind in left eye), occasional malignant reactions to anesthesia and born with a self correcting VSD. His curves are 55/43.

We're trying to connect with other parents who have gone through this to find out about recovery, activity post-surgery and any other information. His doctor has just ordered a Providence brace that we'll get in a couple of weeks but the docs are not optimistic that the brace will arrest the curves (they could only attain 50% correction).

Will is very active now - basketball, soccer and more. Can he still be?

It would also be great to hear from parents whose kids have scoliosis secondary to Chiari to find out what your experience has been.

Many thanks.

01-16-2008, 10:47 AM

Q's Mom

expandable rod surgery

Hi Will's Mom

My son had the expandable rod surgery(VEPTER) when he was 22months. We have had great success with it. We tried bracing with no results when he was just a year old. Since our son had his first implant done at 22 months we have had a second rod placed for an upper curve and have had several expansions. I wouldn't change a thing about having the surgery, other than having him be perfectly healthy and not needing to go thru it at all, that would have been my 1st choice. Since his curves were 95 and 98 degrees we needed to do something and the VEPTER surgery changed his life. He was getting to the point where it was hard for him to breath and it was affecting his heart. He walked leaned over to the left side and didn't have enough air to talk in sentences. After his 2nd implant he grew 4inches stood nice and straight and was talking in sentences. He went from a 95 to 35 and from 98 to 45. If you are having any doubts about the surgery, let me put your mind at ease. We had a difficult time making the decision to go ahead with the 1st surgery, but I am so glad we decided to have it done. We had a 10 day recovery with the 1st implant but that was because at that time the surgery was not FDA approved, which it is now. And because my sons lungs were involved we had a hard time getting his oxygen levels up. But since then we have only spent 1 to 3 days in the hospital. He is usually up and walking within a day or two and usually misses about 2 weeks of school. Just due to the long days and sitting up in a chair all day. Our school is very flexible and lets him lay on a rug on the floor if he tires too much or go to the school nurse for a 1/2 hour or so. As for activities he still plays t-ball and runs and plays with the other children. The only activities we dont allow him to participate in is contact sports, hanging from the monkey bars, or anything that could possible pull on the rods. He will be unable to move up to baseball because of the sliding issues. But he is very happy with what he is able to do, because without the surgery he would either be in a wheelchair or not even be with us. I thank God everyday for the doctors at the shriners hospital where we go, and I also thank Him for leading us there. I hope Will has success with the brace, but if the curve continues to progress I would recomend the VEPTER surgery.
:)

01-24-2008, 10:07 AM

Will's Mom

Thanks so much for the information. I'm sorry for the delay in responding. We've been getting second, third and fourth opinions. It doesn't look like Will is a candidate for the VEPTR or the VBS procedure. We're working to get an appointment at Shriner's in Philadelphia to get an evaluation done there. It's wonderful to hear how active your son is ... that's been a big concern with us because Will is ALL BOY ... running, basketball, skiing, skating and so on.

Thanks again,

Lindsay

01-24-2008, 04:04 PM

Carmell

Hi Lindsay,

Did I reply to you already? I thought I did. My 12yr old son had VEPTR rods placed 6+ years ago. He is very active - no physical restrictions (except no full contact sports). If you saw him on the street, you would not know what his back looks like.

It sounds like Will has had his share of medical experiences. Hopefully the occasional malignant reactions to anesthesia never happen again. I'm assuming that if they know about this condition ahead of time, they can plan for it? Frightening, I'm sure.

Why are the docs saying he isn't a candidate for VBS or VEPTR? Did they give you good reasons? How many opinions have you gotten? I see you are going to Shriners in Philly for another evaluation. I believe you will be in good hands there. Please let us know how the appointment goes and what you find out.